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Living with cancer· Appointment prep

Appointment sheet: Early-stage classical Hodgkin lymphoma (stage I to II)

One page to bring and write on: your details, the questions for Early-stage classical Hodgkin lymphoma (stage I to II) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Early-stage classical Hodgkin lymphoma (stage I to II)

Prepared with OnCo (onco.cc/prep/early-stage-classical-hodgkin-lymphoma/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

18 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example Interim FDG-PET after two cycles, CD30 and CD15 on Hodgkin and Reed-Sternberg cells; CD20 usually negative, Bulky disease, erythrocyte sedimentation rate, B symptoms and number of sites, EBV statusin mixed cellularity disease, Baseline metabolic tumour volume), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Staging
  1. 5.For my situation (staging), which of the standard options do you recommend and why?
Early favourable disease
  1. 6.For my situation (early favourable disease), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Doxorubicin, Vinblastine, Dacarbazine, and what side effects should I expect?
Early unfavourable disease
  1. 8.For my situation (early unfavourable disease), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Doxorubicin, Vinblastine, Dacarbazine, and what side effects should I expect?
Children and adolescents
  1. 10.For my situation (children and adolescents), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Brentuximab vedotin, Nivolumab, and what side effects should I expect?
  3. 12.How do the results of AHOD2131 (COG / NCTN) apply to someone like me?
Survivorship
  1. 13.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
  1. 14.Are there clinical trials I could join, for example of AHOD2131 (COG / NCTN), Safety and Efficacy of Pembrolizumab (MK-3475) in Children and Young Adults With Classical Hodgkin Lymphoma (MK-3475-667/KEYNOTE-667), PET-adapted (response-adapted) therapy, Brentuximab vedotin?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “Radiotherapy omission trades a few percent more relapses against late harms that take decades to appear”. How does that affect my plan?
  5. 18.I read that “Bleomycin lung toxicity and doxorubicin cardiotoxicity persist even in short regimens”. How does that affect my plan?

The words I may hear

  • ABVD, BEACOPP and BrECADD (Hodgkin lymphoma regimens): The chemotherapy recipes that cure most Hodgkin lymphoma: ABVD (four drugs, the long-standing standard), the more intensive German BEACOPP, and newer versions that replace bleomycin with brentuximab vedotin (A+AVD) or add nivolumab (N-AVD).
  • Reed-Sternberg cell: The Reed-Sternberg cell is the giant, often two-nucleus cancer cell of Hodgkin lymphoma; it makes up only about 1% of the tumour, and the rest is immune cells it has recruited.
  • Deauville five-point scale: A 1-to-5 score for how bright a lymphoma looks on PET compared with the liver; 1-3 is considered a complete metabolic response.
  • Lugano classification / Ann Arbor staging: The Lugano classification is the lymphoma staging system: stage I to IV by how many lymph node regions and organs are involved, with PET-based response criteria.
  • Late effects and survivorship toxicity: Health problems appearing months or decades after treatment ends: heart damage, infertility, second cancers, lymphoedema, dry mouth, memory problems, weak bones.

Tests and results to bring

Staging: FDG-PET/CT with Lugano staging; bone marrow biopsy no longer needed when PET is used; fertility counselling and cardiac baseline.

Biomarker results to ask for: Interim FDG-PET after two cycles (Deauville score; guides omission of radiotherapy), CD30 and CD15 on Hodgkin and Reed-Sternberg cells; CD20 usually negative, Bulky disease, erythrocyte sedimentation rate, B symptoms and number of sites (GHSG and EORTC risk factors), EBV status (EBER) in mixed cellularity disease, Baseline metabolic tumour volume (prognostic, research), Circulating tumour DNA (research; PhasED-seq).

Scans and tests linked to this cancer: FDG PET, Mammography & tomosynthesis, PET-adapted (response-adapted) therapy, ctDNA monitoring in lymphoma (PhasED-seq, clonoSEQ).

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call